Limited support for advanced breast cancer sufferers in Ireland
The effect of a second diagnosis can be like a bereavement
Rhona Nally: ‘the focus was on getting through treatment and getting on with your life. I left very alone and upset after these meetings.’ Photograph: Jane Curtin.
Just weeks after completing a year of tough and invasive treatment for primary breast cancer, Rhona Nally received the distressing news which every person with the disease fears – the cancer had spread to her bones in multiple sites.
“It was like a bereavement,” she recalls today, happily a full nine years after that devastating diagnosis, “You lose your health, your work, your hopes, everything people take for granted.”
The narrative of most cancer treatment these days is an encouraging one – new drugs, improved results, longer survival, better services. But for Nally and an estimated 3,000 women in Ireland who have advanced breast cancer, the situation is altogether less sanguine. Their world is marked by isolation from the mainstream breast cancer community, which is more geared to women with a diagnosis of primary breast cancer and the greater chances of a successful treatment that this involves.
“The initial diagnosis of cancer comes as a great shock, but you’re put on a very well-defined path,” says Nally, a 58-year-old mother of three from Knocklyon in south Dublin. “You get support, a breast cancer nurse, access to multidisciplinary teams. You know what treatment you’ll have and when. It’s not something you want to happen but there is, hopefully, light at the end of the tunnel.”
With a secondary diagnosis, she says “there’s none of that. There is no defined path. You play it by ear. Treatments are tried, but they may or may not work. And, generally, it’s terminal.”
Treatment for primary cancer is invariably aggressive, as doctors try to root out the cause of the disease for good. With advanced cases, it’s more about palliative care and quality of life. Advanced breast cancer includes metastatic breast cancer (stage IV) which is the most serious form of the disease and occurs when the cancer has spread to other parts of the body such as the bones, liver or lungs.
‘Breast cancer community’
It also includes locally advanced breast cancer (stage III) when the cancer has spread to the lymph nodes or other tissue in the area of the breast but not to the distant sites in the body. It is estimated that about 700 women present with advanced breast cancer every year.
Áine Melinn, a psychologist and Irish Cancer Society facilitator, describes how women, when first diagnosed with breast cancer, are “instantly part of a vibrant breast cancer community. But when their cancer spreads or if they are first diagnosed with advanced breast cancer, it is no longer about becoming a survivor, it’s about surviving.”
Nally recalls her upset on receiving a diagnosis of secondary cancer and the lack of supports that existed in 2004. She gave up her teaching job and tried to arm herself with knowledge.